Helle Ploug Hansen

Nurses' experiences of caring for critically ill, non-sedated, mechanically ventilated patients in the Intensive Care Unit: A qualitative study

OBJECTIVEnThe objective was to explore nurses experiences of caring for non-sedated, critically ill patients requiring mechanical ventilation.nnnDESIGN AND SETTINGnThe study had a qualitative explorative design and was based on 13 months of fieldwork in two intensive care units in Denmark where a protocol of no sedation is implemented. Data were generated during participant observation in practice and by interviews with 16 nurses. Data were analysed using thematic interpretive description.nnnFINDINGSnAn overall theme emerged: Demanding, yet rewarding. The demanding aspects of caring for more awake intubated patients included unpredictability, ambiguous needs and complex actions, while the rewarding aspects included personal interaction. Three sub-themes were identified: (i) caring for and with the patient, (ii) negotiating relational and instrumental care and (iii) managing physical and emotional closeness.nnnCONCLUSIONnDespite the complexity of care, nurses preferred to care for more awake rather than sedated patients and appreciated caring for just one patient at a time. The importance of close collaboration between nurses and doctors to ensure patient comfort during mechanical ventilation was valued. Caring for more awake non-sedated patients required the nurses to act at the interface between ambiguous possibilities and needs, which was perceived as both demanding and rewarding.

Patient Involvement in Health Technology Assessment

As stated in IAPO’s Declaration on patient-centred healthcare, a patient-centred healthcare system is one in which adequate patient involvement in decision-making takes place regularly. HTA plays a crucial role in informing health policy decisions that will inevitably impact on patients’ lives. If a decision is envisaged to have an impact on patients’ lives, it cannot be taken without involving patients throughout all stages of the process. By relying on their unique set of skills and knowledge, individual patients and patient advocates can provide additional, distinctive insights, which must be appropriately valued and incorporated in HTA and beyond. Definition

'An Arena for Sharing': Exploring the Joint Involvement of Patients and Their Relatives in a Cancer Rehabilitation Intervention Study

Background: Despite an increasing focus on cancer rehabilitation programs, there is limited knowledge about the experiences of residential rehabilitation focusing on both the patients and their relatives. Objective: The aim of this study was to explore the experienced benefits of the joint involvement of patients and their relatives in a 5-day residential cancer rehabilitation course, provided as part of a larger intervention study in Denmark. Methods: Ethnographic fieldwork, consisting of participant observations and informal conversations, was conducted with 20 individuals (10 patients and 10 relatives). In-depth interviews were conducted in the participants’ homes 1 month after the rehabilitation course. Data were analyzed by a constant comparative method. Results: Residential rehabilitation course was identified to serve as an “arena for sharing,” underpinned by 3 dimensions of sharing: sharing cancer experiences, sharing strategies, and sharing mutual care. Conclusion: Sharing in residential rehabilitation is experienced as useful for cancer patients and their relatives, to validate cancer-related strategies and strengthen mutual understanding within relationships. Implications for Practice: The results can guide the development of cancer rehabilitation to involve patients and their relatives and provide opportunity for sharing and empowerment on individual as well as couple and group levels.

A lonely life—A qualitative study of immigrant women on long-term sick leave in Norway

BACKGROUNDnThis study focuses on the everyday life of immigrant women with chronic pain on long-term sick leave in Norway. Research has shown that rehabilitation of immigrant women with chronic pain might be challenging both due to their lack of linguistic competence, due to lack of sufficient confidence/trust in their employers and in health personnel and lack of knowledge/skills among health care personnel in meeting immigrants special needs.nnnOBJECTIVEnThe objective of the study was to explore how immigrant women on long-term sick leave in Norway due to chronic pain experience their illness and their relationships at work and in the family.nnnDESIGNnThis article has a qualitative design, using participant observation and in-depth interviews.nnnMETHODSnParticipant observations were carried out in an outpatient clinic and qualitative interviews were conducted after the rehabilitation period. A hermeneutic approach was used to understand the meaning of the narrated text. All the authors participated in the discussion of the findings, and consensus was obtained for each identified theme.nnnSETTINGSnThe research was conducted at an outpatient clinic at a rehabilitation hospital in the southern part of Norway. The clinic offers wide-ranging, specialized, multidisciplinary patient evaluations that last between 24 and 48h, followed by advice and/or treatment either individually or in a group, i.e. in a rehabilitation course.nnnPARTICIPANTSnParticipants (immigrant women) who had been referred to the outpatient clinic and to a rehabilitation course were recruited. Fourteen African and Asian women were observed in two rehabilitation courses, and eleven of them agreed to be interviewed once or twice (3).nnnRESULTSnThe interpretation revealed the following two main themes: Shut inside the home and Rejected at the workplace. Based on the womens experiences, a new understanding emerged of how being excluded or not feeling sufficiently needed, wanted or valued by colleagues, employers or even by family members rendered their daily lives humiliating and lonely.nnnCONCLUSIONSnThe immigrant women on long-term sick leave live in triple jeopardy: being ill and being lonesome both at home and at the workplace. This can be described as a vicious circle where the humiliating domestic and workplace-rejection might reinforce both the womens experience of shame and avoidance of telling anybody about their illness/symptoms, which then results in more days on sick leave during which they are again isolated and lonesome. There is a need for more research on multidisciplinary rehabilitation approaches designed to cater for immigrants special needs.

Involvement of patients with lung and gynecological cancer and their relatives in psychosocial cancer rehabilitation: a narrative review.

IntroductionGetting cancer is stressful for most patients and their relatives, and research has shown that psychosocial support is needed. Still, cancer care fails to appropriately address psychosocial problems associated with cancer. Research on this topic is often seen from the perspective of either the patient or the relative, even though it is suggested that psychosocial support is beneficial for the patient and the relative as a pair. Furthermore, research on the need for psychosocial support rarely involves patients with gynecological and lung cancer and their relatives, even though they often suffer from isolation and stigmatization. The aim of this review was therefore to summarize knowledge about psychosocial support with regard to individual needs, involvement of significant others, and providers of psychosocial support focusing on this specific population.MethodA narrative review procedure was chosen. This method is a specific kind of review, which summarizes, explains, and interprets evidence on a selected topic. The review process was structured according to typical scholarly articles with attention to the search and review process.ResultsA total of 16 studies were included in the review. The studies were divided into two main categories: (1)xa0studies focusing on needs for psychosocial support; and (2)xa0studies focusing on interventions. The needs studies were analyzed, and three themes emerged: the needs of the patient and the significant other across the cancer trajectory; the needs of the significant other as a carer; and needs and ongoing and tailored support. The intervention studies were directed toward the patient and the relative, the patient, or the relative. Five interventions comprising various forms of support that were purely supportive and were carried out by healthcare professionals were identified.ConclusionThere were overlaps between the needs of the patient and the relative, but there were also distinctive characteristics of the needs in the two groups. The needs varied during the cancer trajectory, and we therefore recommend that support be offered continuously. It was also evident that the relatives should be involved in the patients’ care and that the involvement was beneficial for both the patient and the relative.

A sense of agency: An ethnographic exploration of being awake during mechanical ventilation in the intensive care unit

BACKGROUNDnThere is a current trend towards lighter or no sedation of mechanically ventilated patients in the intensive care unit. The advantages of less sedation have been demonstrated as shorter duration of mechanical ventilation and reduced length of stay in the intensive care unit and hospital. Non-sedated patients are more awake during mechanical ventilation, but little is known about how this affects the intensive care patient.nnnAIMnTo explore patients experiences of being awake during critical illness and mechanical ventilation in the intensive care unit.nnnDESIGN & METHODSnThe study was based on Interpretive Description, an applied inductive, qualitative approach with an ethnographic exploration of the patient experience. A longitudinal perspective was obtained through 13 months of fieldwork followed by two patient interviews after intensive care and after hospital discharge. Data were analyzed using thematic analysis.nnnSETTING & PARTICIPANTSnThe fieldwork was conducted in two intensive care units at a university hospital in Denmark, where the no sedation strategy for mechanically ventilated patients was implemented. Twenty-eight patients were observed in the intensive care unit. Twenty patients, who had been awake for most of the time on mechanical ventilation, were interviewed during the first week after discharge from intensive care. Thirteen of these patients were interviewed again two to four months after discharge.nnnFINDINGSnThree themes were identified: A sense of agency, The familiar in the unfamiliar situation and Awareness of surrounding activities. Patients had the ability to interact from the first days of critical illness and a sense of agency was expressed through initiating, directing and participating in communication and other activities. Patients appreciated competent and compassionate nurses who were attentive and involved them as individual persons. Initiatives to enhance familiar aspects such as relatives, personal items and care, continuity and closeness of nurses contributed to the patients experience of feeling safe and secure in the unfamiliar setting. Patients were aware of the surrounding activities and felt powerless when ignored by the staff and were affected when witnessing fellow patients suffering.nnnCONCLUSIONnBeing awake during mechanical ventilation entailed new opportunities and challenges for critically ill patients. Patients found themselves at the interface between agency and powerlessness as they were able to interact, yet were bound by contextual factors such as bodily weakness, technology, spatial position and relational aspects. This knowledge is important to develop patient-centered nursing practice in the context of lighter sedation.

Healthcare professionals experience with motivational interviewing in their encounter with obese pregnant women

OBJECTIVEnto explore and describe how healthcare professionals in the Southern Region of Denmark experienced motivational interviewing as a communication method when working with pregnant women with obesity.nnnDESIGNna qualitative, descriptive study based on face-to-face interviews with 11 obstetric healthcare professionals working in a perinatal setting.nnnMETHODSna thematic descriptive method was applied to semi-structured interviews. The healthcare professionals experiences were recorded verbatim during individual semi-structured qualitative interviews, transcribed, and analysed using a descriptive analysis methodology.nnnFINDINGSnmotivational interviewing was found to be a useful method when communicating with obese pregnant women. The method made the healthcare professionals more aware of their own communication style both when encountering pregnant women and in their interaction with colleagues. However, most of the healthcare professionals emphasised that time was crucial and they had to be dedicated to the motivational interviewing method. The healthcare professionals further stated that it enabled them to become more professional in their daily work and made some of them feel less burned out, powerless and stressed as they felt they had a communication method in handling difficult workloads.nnnCONCLUSIONnhealthcare professionals experienced motivational interviewing to be a useful method when working perinatally. The motivational interviewing method permitted heightened awareness of the healthcare professionals communication method with the patients and increased their ability to handle a difficult workload. Overall, lack of time restricted the use of the motivational interviewing method on a daily basis.

Caught in suffering bodies: a qualitative study of immigrant women on long-term sick leave in Norway.

AIMS AND OBJECTIVESnThis article explores the issues faced by immigrant women on long-term sick leave due to chronic pain, focusing on their personal perspectives on their daily lives, their bodies and their pain.nnnBACKGROUNDnAn increasing number of immigrants in Norway present a challenge to the public health service, above all in relation to the health needs of immigrant women, many of whom risk having to take long-term sick leave due to chronic pain.nnnDESIGNnThis study has a qualitative design, with participant observation and in-depth interviews.nnnMETHODSnParticipant observations were carried out from a sample of fourteen immigrant women in an outpatient clinic at a rehabilitation hospital. In addition, qualitative interviews were conducted after the rehabilitation period. A hermeneutic approach was used to understand the meaning of the narrated text.nnnRESULTSnThe analysis revealed one main theme, Bodies marked by onerous experiences, as well as two subthemes: It is in my body and Invisible pain. The immigrant women struggled with invisible, chronic pain, which they blamed on physically tiring workdays and stressful life situations. Furthermore, they felt that their experiences of discriminative attitudes at the workplace worsened their suffering.nnnCONCLUSIONSnThe chronic pain made the immigrant women suffer, because they experienced it as a threatening, incomprehensible and unreal force, without meaning or the ability to be controlled. Their own psychological distress exacerbated their pain.nnnRELEVANCE TO CLINICAL PRACTICEnImmigrant women on long-term sick leave are likely to need special approaches that are closely adapted to their different backgrounds and their unique personal experiences. We recommend culturally appropriate family counselling and collaboration with employers at the womens workplaces.

Informed Choice for Participation in Down Syndrome Screening: Development and Content of a Web-Based Decision Aid

Background In Denmark, all pregnant women are offered screening in early pregnancy to estimate the risk of having a fetus with Down syndrome. Pregnant women participating in the screening program should be provided with information and support to allow them to make an informed choice. There is increasing interest in the use of Web-based technology to provide information and digital solutions for the delivery of health care. Objective The aim of this study was to develop an eHealth tool that contained accurate and relevant information to allow pregnant women to make an informed choice about whether to accept or reject participation in screening for Down syndrome. Methods The development of the eHealth tool involved the cooperation of researchers, technology experts, clinicians, and users. The underlying theoretical framework was based on participatory design, the International Patient Decision Aid Standards (IPDAS) Collaboration guide to develop a patient decision aid, and the roadmap for developing eHealth technologies from the Center for eHealth Research and Disease Management (CeHRes). The methods employed were a systematic literature search, focus group interviews with 3 care providers and 14 pregnant women, and 2 weeks of field observations. A qualitative descriptive approach was used in this study. Results Relevant themes from pregnant women and care providers with respect to information about Down syndrome screening were identified. Based on formalized processes for developing patient decision aids and eHealth technologies, an interactive website containing information about Down syndrome, methods of screening, and consequences of the test was developed. The intervention was based on user requests and needs, and reflected the current hospital practice and national guidelines. Conclusions This paper describes the development and content of an interactive website to support pregnant women in making informed choices about Down syndrome screening. To develop the website, we used a well-structured process based on scientific evidence and involved pregnant women, care providers, and technology experts as stakeholders. To our knowledge, there has been no research on the combination of IPDAS standards and the CeHRes roadmap to develop an eHealth tool to target information about screening for Down syndrome.

How Narrative Journalistic Stories Can Communicate the Individual’s Challenges of Daily Living with Amyotrophic Lateral Sclerosis

BackgroundTo complement the clinical and therapeutic knowledge about the symptoms, prognosis, and social implications of amyotrophic lateral sclerosis (ALS), health research and care need to develop methods that capture and communicate the unique individual impact on daily living with the disease.ObjectiveTo explore how narrative journalistic stories can communicate experiences of daily living with ALS and compensate the progressive loss of the ability to speak.MethodsTwenty-four interviews at home with six people diagnosed with ALS were transformed into narrative journalistic stories. A formal readership was selected by the participant among his or her most significant health professionals. Topics of stories were categorized and selected themes analysed and interpreted.ResultsThe stories communicated daily living with ALS as a continuous process of creating a new normality of everyday life. The stories also revealed conflicting views between patient and professionals regarding information about disease and prognosis. The approach used provided an understanding of the individual healthcare professionals’ engagement with the patient.ConclusionsThe narrative journalistic story enhances communication about daily living with ALS by offering a mode of sharing experiences that compensate the progressive loss of communicative abilities. The story sustains meaning for patients living with ALS, and supports them in appreciating a day-to-day life where they are not just waiting for death. Narrative journalistic storytelling may educate health professionals to more effectively comprehend that a medical prognosis should be complemented by understanding the individual’s unique experience of vulnerability. In particular, this applies to severe rare diseases where insight is difficult to obtain.